Another Day, Another Protocol: The Tricky Case of Hydrogen Sulfide SIBO

July 11, 2017

**This post was written in 2017 (I used to write posts that were more time-dependent), and after it was written I discovered I did have SIBO as well as the CBS mutation, which were causing my issues with sulfur, and both have been resolved since then.*

Yes, you read that title right. Another protocol, comin’ atcha. Kinda. I feel like my life over the past two years has pretty much been a series of protocols. I alternate between being extremely frustrated about it and laughing about it. In the end, though, I know it is only making me a better holistic health coach and will make me a better Nutritional Therapy Practitioner when I finish my program. If I can get through these protocols, then I have the personal experience necessary to really help others get through their own.

If you’ve been following me for awhile, you’ll know that I started a protocol to heal my leaky gut, food intolerances, and Candida overgrowth about 5 months ago. If you want the details, you can read all about it in this post and this post. In March, I wrote an update post, which you can read here. After that, I didn’t really have much to update anyone on. I was just truckin’ along, doing my thing, and everything was going well.

After a few months on the protocol, I felt really great. My stomach wasn’t hurting after I ate, my digestion was becoming more regular, and overall I just felt a lot better. Things were finally turning around, and I was so happy. Even though my food list was limited, following the protocol was worth it when I felt that much better.

After awhile, though, I wasn’t feeling as great. I had low energy, was getting a ton of foot cramps, and was waking up multiple times throughout the night. I was exhausted all the time because I could never get a good night’s sleep. The bloating and digestion problems started coming back more often. Waking up in the middle of the night is often due to blood sugar irregularities, so I started tracking my blood glucose levels to see what was happening. They were all over the place, which was completely bizarre. I could eat the same meal three times and have completely different blood sugar levels every time. My fasting blood glucose levels and BG levels upon waking in the middle of the night were also really all over the spectrum. Sometimes they were extremely high, and sometimes extremely low. It was really puzzling and didn’t make sense in the context of the type of diet I follow.

My NTP recommended I try adding in some starchy carbs, because my body seemed to be resisting keto. The symptoms I was getting were the same I have gotten before when I went too low carb for too long without carb ups, so I was hoping some starches would solve the problem. At the same time, she had me add in a number of other supplements. I started off by adding in some butternut squash, and thankfully there were no immediate weird side effects like I used to have. No stabbing pains, no fainting.

However, after a few days, I started to feel horrible. My bloating was back full force, I couldn’t have a bowel movement, I was so sluggish and tired and uncomfortable that I could barely move around, I had brain fog, I was cranky and tired, my skin broke out, and my foot randomly got so swollen that I couldn’t walk on it. I felt like all the work I had done over the past 4 months had just been wiped away from a week of butternut squash.

It was truly bizarre. I didn’t know if the foot swelling was connected to the food or supplements or neither, but it was all too much for me to handle, especially right before graduation. What was especially concerning, though, was that my body was responding so poorly to a starchy carbohydrate. So far into the protocol, my stomach should have been healed enough to not have that digestive distress in response to a measly 1/2 cup of butternut squash a day. This tipped me and my NTP off to the fact that something else must be going on. I needed to get through grad, so I stopped the squash and new supplements to get my body back to where it was at before. The bloating went down, the brain fog went away, my foot swelling started to reduce, and I felt much better.

After that discovery, we started looking into what else could be wrong. Clearly, there was a missing piece to the puzzle. Meanwhile, I was starting to panic because I was supposed to be nearing the end of the protocol – not finding more issues! I chatted with my NTP, a few other NTP friends, and did a lot of my own thinking, and pretty much everyone agreed that it seemed like a SIBO component was still there.

Ugh, SIBO. The bane of my existence. I thought I got rid of that thing! I didn’t want to admit it could be a possibility. (If you’re unfamiliar with SIBO, it stands for Small Intestinal Bacterial Overgrowth, and it was the main thing causing all of my symptoms a few years ago. Symptoms can include bloating, gas, abdominal pain, constipation or diarrhea, etc.)

When I retested for SIBO before starting this protocol, my test results came back looking… weird. The test for SIBO is a breath test that checks for levels of hydrogen and methane gases in the small intestine over 3 hours. When my test came back, both the hydrogen and methane were completely flat-lined. My NTP thought that was really strange and asked my doctor if he had ever seen that type of result before. She was wondering if something went wrong with the test, because there should have been at least SOME gas in there! Even just a little bump in the chart. He told us that he saw it all the time, and that it meant there was no SIBO left. We trusted his word and moved on. I didn’t have SIBO.

Or so I thought.

I think you know where this is going.

Upon further research, we learned more about a new type of SIBO that is currently being researched – hydrogen sulfide SIBO. If you’re unfamiliar with SIBO, it’s usually either methane or hydrogen dominant. That means that there is an overgrowth of bacteria in your small intestine that are either producing methane or hydrogen gas, which show different symptoms. These were the only two types of SIBO I was familiar with up until this point, and these are the two most commonly talked about.

However, we now know that there is another type of gas, hydrogen sulfide. Unfortunately, this gas cannot be detected by regular SIBO breath tests. Upon more digging, it seems to be the same story over and over. Someone takes the breath test and the results are negative for SIBO. With a flat line. But the person still has all of the symptoms. And more often than not, when the person is treated for SIBO, the symptoms go away, indicating that they did have another type of SIBO. Researchers have discovered that that other type of SIBO is hydrogen sulfide SIBO.

This was all discovered relatively recently in the scientific community, and this type of SIBO is currently being researched. They are in the process of developing a breath test to officially test and diagnose it, but it’s still in the trial stage. Apparently, there is a urine test for hydrogen sulfide, but its correlation to SIBO isn’t reliable.

My NTP went to the SIBO Symposium, hoping they would give more information about this new type of SIBO, but sadly not much was said. Dr. Mark Pimentel, known for his SIBO research, apparently didn’t want to reveal much since testing is still underway and nothing has been published yet.

Meanwhile, I obviously started researching. I tried to read everything I could about hydrogen sulfide SIBO, but the pickings were slim. There really is just not that much information about it. I dug hard, though, and I actually did find a few scientific journals, research articles, podcasts, blog posts, personal testimonies, and forums talking about it. There were a lot of people who had similar stories to mine, and treating their SIBO again, as hydrogen sulfide SIBO, was their missing piece to the puzzle. It gave me hope.

Here are some things I found to be characteristic of hydrogen sulfide SIBO versus the other types:

Associated with SIBO breath tests that flat line and stay flat-lined throughout the third testing hour

Linked to sulfur intolerance and an increase in symptoms when following a high sulfur diet

Linked to fibromyalgia and chronic fatigue syndrome

Associated with heavy metal toxicity due to methylation processes not functioning correctly

Mood disturbances like anxiety, depression, and random outbursts of anger

Meanwhile, it was finally retesting week for me on my original protocol. During that week, I went off of all supplements and cruciferous vegetables, per testing rules. I was nervous about what would happen when I stopped all of my supplements, but I was amazed. I felt great – the best I had in a long time. My digestion was regular and my bloating went away. I had a ton of energy. Then, when testing was over and I added everything back in, I felt terrible. I was bloated, my stomach was killing me, I was constipated… it was a mess.

After all of my research and that series of events, I became convinced I have hydrogen sulfide SIBO. It just makes sense. I still have SIBO symptoms, my test results were flat lined, I have the genetic mutations that are associated with sulfur intolerance and sensitivity to heavy metal toxicity, I have constipation, “rotten egg” flatulence (sorry, not sorry), chronic fatigue symptoms, and I had noticed (but didn’t want to admit), that my body was not responding well to cruciferous veggies. I’ve also always had a problem with eggs, which is why I only eat them a few times a week if that. I discussed all of this with my NTP, and we were pretty much on the same page.

That being said, there is no way to know for sure if I have hydrogen sulfide SIBO or not since there is no official test for it. Well, that’s annoying. I’m interested in seeing if I can somehow get into the test trials being run, but we’ll see how involved that is. Because there is no way to know for sure if I have it, my NTP is reluctant to put me on a full SIBO protocol. She wants to wait and see what my other test results are, and then go from there.

Meanwhile, I was really looking forward to my appointment with her last week because my stool results were supposed to be in. If everything was good, I would be allowed to start adding some foods back in – the foods that my MRT showed I reacted to. I have been waiting so long for this, and I honestly have been getting desperate for the end of this protocol. I’m craving turkey, beef, spinach, turmeric, black pepper…However, I was really disappointed because the results weren’t in yet, so I haven’t been able to add anything in. The results we did received were my Dutch test results. Long story short – my cortisol is sky high. Typical. We’ll get into that another time.

In terms of the hydrogen-sulfide SIBO, we decided to do a little experiment. From all of my research, most practitioners were saying the best plan of action was to treat it like regular SIBO (herbals or antibiotics and a low FODMAP diet), plus do a low-sulfur diet. Since I want to see if sulfur truly is causing an issue, and because I’m curious about why I felt so good when I went off so many sulfur-rich foods during my retest week, I’m going to do an experiment. I’m going to do a 7-10 day low sulfur diet and see how that affects my symptoms.

There are a ton of different low/high sulfur food lists out there, and they all seem to conflict. It’s similar to how all of the low FODMAP lists somehow seem to conflict with each other. Because of that, I’m just sticking to one list to make things easier on myself. This is the list I’m using during my experiment, because it seemed to be the one that most people had the most success with and stood behind in terms of validity. Like FODMAPs, though, there seems to be a lot of variation between individuals.

I’m two days into my low-sulfur diet and have had a few setbacks. First of all, right before I started this, I ate as many sulfur-rich foods as I could. I was worried I was going to miss them (I LOVE CAULIFLOWER AND BRUSSELS), so I went all out on the cruciferous veggies and eggs and leafy greens. Interestingly enough, I had never felt worse in my life. I felt like a fog came over me, I felt like my mood was completely disrupted, I felt sluggish and bloated, I couldn’t have a bowel movement, and I was incredibly bloated. That was interesting.

I’ve read it takes at least 4-7 days for the sulfur to start leaving your system, so I’m still waiting to see how I’ll feel. Honestly, I have been struggling because my food list is so small. Unfortunately a lot of low-sulfur foods are the same foods I reacted to on my MRT, which is limiting my options. I’m pretty much sticking to cucumbers, eggplant, fennel, zucchini, and proteins for now. I’m praying that my stool test will come in soon and show good results. Once I can add in some more foods from my MRT, the low-sulfur life will be a bit easier!

Unfortunately the only low sulfur greens are lettuce and red chard, but I reacted to lettuce on my MRT, so I’m stuck with red chard since all other leafy greens are out. I actually spent probably 8 hours the other day trying to figure out if endive was low or high sulfur because I was so desperate for another option for salads, but I kept reading conflicting things so I gave up. I’ll be eating a lot of red chard, in the meantime.

The first two days have also been hard because I realized how repetitive my meals are going to be. I’m going to be eating a lot of zucchini! And not being able to have much salad makes things more difficult because I have to cook a lot more (especially when it’s a million degrees outside), but I’ll get used to it. It’s only 7-10 days, and if this is the key to my digestive issues, it will be so worth it.

Sulfur is incredibly important in our diets for a number of functions, so I would never plan on cutting sulfur completely out of my diet forever. I just want to get my body to a baseline and figure out if I am somewhat intolerant to sulfur, or if hydrogen sulfide SIBO could be a factor in my symptoms. If either is true, it’s all about finding my body’s limit with sulfur so I can feel my best, instead of overloading my body with too many sulfur-rich foods at once, which I might have been doing before.

I will keep you updated on how this experiment goes, and I’m hoping that I can start adding in MRT reactive foods very soon to make the next 7-10 days easier! Wish me luck!

What do you think?

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DISCLAIMERThe information on this website is intended as professional advice only and should not be used in place of a medical provider to diagnose or treat any illness. This website contains affiliate links, meaning that if you purchase something from one of my links, I will receive a small percentage, at no additional cost to you. I will only ever recommend products that I truly believe in, and that I use myself or find to be valuable.

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